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My name is Paige Crooks-my husband and I have 6 year old boy/girl twins and a 3 year old son, Cohen, who has 22q. At 28 weeks I had my routine ultrasound. Baby looked good, however, I seemed to have a significant increase in my amniotic fluid level. The next ultrasound was a very detailed one. Our MFM doctor took us into a room, following the scan. “So, the baby has a folded left ear, and also, a bent finger on the right hand. This, along with the increased fluid, has us concerned”. They suggested chromosomal testing then an amniocentesis. Two weeks later, we had our 22q diagnosis. I continued to get bigger and bigger-measuring 41 weeks at 33 weeks. Cohen continued to do well, but I ran into issues which resulted in us meeting our baby boy 5 weeks 3 days earlier than expected. Also, resulting in another NICU journey-our twins were born at the exact same gestation and spent 25 and 29 days in the NICU. Cohen spent 99 days total, between two NICUs.
He escaped the major cardiac differences and only has an aberrant right subclavian artery. His major issue is swallowing, he had a supraglottoplasty for mild laryngomalacia during his NICU stay. He was also diagnosed with esophageal dysmotility. Cohen has significant hearing loss in his folded ear. His first hospital stay, was 5 days after NICU discharge. He developed a perianal fistula which caused him to spike a fever and required IV antibiotics. During the procedure to repair the fistula, he was overdosed on fentanyl-10 times his required amount-which caused a full code blue. He ended up in the PICU for 14 days with a collapsed lung because of the chest compressions. He had a very rough first year and a half-19 hospital admissions, a lot being rhino enterovirus and a few due to aspiration pneumonia. He has had a total of 5 surgeries. Cohen has been completely g-tube dependent since 3 months of age. He uses CPAP at night only, requires no oxygen. He has albuterol and Flovent inhalers that we use in conjunction with his airway clearance vest, but we only use it when he is sick.
He is now thriving!! He loves to ride bikes with his brother and sister and loves cars! He is a wild child!!! He is the sweetest, happiest, silliest 3 year old I know. Cohen is followed by the 22q clinic at Children’s Mercy, he sees several specialists. He goes to speech twice a week and has taken off with his talking! I’m also happy to report he gets to attempt a g-tube wean here in the next few months, he is an eating machine!
I have learned, and grown, more since Cohen was born than any other time in my life. I’ve learned patience, and I’ve witnessed miracles that I otherwise would have been too busy to notice. I’ve learned acceptance, I realize maybe I have been wrong to judge, and one thing all my children have taught me-there is a thing called unconditional love. We can’t imagine life without Cohen-he brings a smile to everyone he meets. He is so strong and I’m so thankful he is all mine.